218. It’s now or never…

I wasn’t put to the piano as a child. Refused the offer of lessons, apparently: as good a reason as any to invent time travel. But I’d really like to be able to play and, to quote Bro-In-Law – a man of infinite resource and sagacity – when someone asked him why he’d just taken up learning Gypsy Jazz Guitar, “I decided not to wait until I was younger.”

I did sort of start learning about twenty years ago but, what with teaching full-time and having two children, practice never seemed to reach the top of the To-Do list. So the enterprise was shelved, pending retirement. Which is Now.

My teacher, Holly, was recommended by a friend and is kind and positive. The first two lessons went fine and we picked out some easy pieces to work on over the half term, as well as some technical exercises. A couple of days in, though, I hit the buffers. There are some key sections that I just can’t do: my fourth and fifth fingers don’t move fast enough. And the more I can’t do it, the more I can’t do it, so end up huffing off into the garden to yank out weeds, this not requiring quick changes between my fourth and fifth fingers. I’ve been starting to think the whole enterprise is doomed, Mr Mainwaring. Wasting my money; wasting Holly’s time.

It’s in this mood, I turn up to my third lesson. Holly listens as I explain the problem and watches me fumble my way through the tricky bits.

“Hmm,” she said quietly. “I can see that there’s a transmission problem in that section. Suppose you try this.” And she pencils in a different fingering; one that doesn’t need me to make quick changes between my fourth and fifth fingers. I try it – and it works! Then she goes through the other piece, adjusting the fingering to take account of my ‘transmission problem’. I bounce out of the lesson like Tigger.

What a brilliant teacher! I’ve practised every day this week and, if you come round for tea, I can serenade you. I’m sure you’ll agree that I’m a regular Les Dawson.

I plan to kidnap Holly and so that she’s on hand to pencil in alternatives for all my Transmission Problems.

***

I promised to tell you about last Monday’s Cure Parkinson’s Trust research update meeting. Lots going on, as always,with more details on their website. For me, the key points were:

There are currently eleven ‘linked’ clinical trials which are either in process or are about to start. These are for drugs which are currently being used for other conditions but have promise for also helping with our own Transmission Problems. The advantage of repurposing drugs in this way is that, should they be effective, it would be vastly quicker and cheaper to get them into use than it would if one were starting from scratch.

The trial of people taking ‘Exenatide’ (a diabetes drug) is just coming to an end and looks promising. Actually, a handful of people at the meeting had been involved in the trial and some have continued on the drug, as it is clearly helping them.

Many of the drugs, in fact, have links to diabetes; one of the researchers is starting to describe PD as “a third sort of diabetes.”

It is widely thought that effective treatment for PD will come from not one drug but a combination of drugs, tailored to the individual. We know that PD is a pick and mix condition, affecting different people in very different ways, so this does make sense.

There are a number of trials trying hard to recruit people who have recently been diagnosed with PD and are not currently taking any meds. If this is you, auction yourself off to the highest bidder now.

There are concerns about the coverage of some drugs trials in the press. A very small trial – just six people – of the cancer drug Nilotinib – was reported in such a way that, while the trial was still in progress and not yet proven to be safe for PD, more than 200 people bought the drug on the internet and just started taking it, leading to some difficult outcomes.

There was a report by two young people –Emma Lawton and David Sangster – who had attended the World Parkinson’s Congress in Oregon earlier this year. It was obviously an amazing experience covering a great many topics. Actually, Emma and David were pretty amazing themselves, both having been diagnosed in their twenties, but still coming over as upbeat and positive people. Check out @1in20parkinsons for David and @ems_lawton for Emma. Also, if you google Emma Lawton, there are links some of her articles and her website is here.

One session that particularly caught their attention in Oregon was about the effects of exercise, and how beneficial it is both in the short term (releasing dopamine) and in the longer term (maintaining neuroplasticity in the brain). Quite a complex study leading the overwhelming conclusion that Exercise is a Very Good Thing. If only one could Find and Replace Exercise with Chocolate…

There was a brief introduction to ‘Parkinson’s World’ which is intended to be a website/portal drawing together all that is going on with PD globally. Early days; watch this space.

Apparently, the CPT considered more than a hundred possible drugs for clinical trial of which it prioritised thirty one, before deciding on these eleven mentioned above. Money, of course, is the main limiting factor: “it’s the funding, not the science, which is slowing down delivery.”

Which seems as good a reason as any to ask you to spread the word about GiveAsYouLive, in case friends and relations might be starting their Christmas shopping. I know you wouldn’t dream of buying anything from Amazon, or EBay, or John Lewis without logging in first to GAYL, because you know that –at no cost to yourself – your online shopping then raises funds for charity. Last week, £2.50 went to CureParkinson’s when we replaced our washing machine, for example. Just think how much would be raised if everyone did this when shopping online? Spread the word.

Update

There’s a superb video of Emma telling her story here – well worth a watch whether or not you have transmission problems.

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2 responses

Brings back memories of my ‘wasted’ piano lessons as a child, when I just wanted to be out riding my bike instead of practising …I wish I had paid more attention. GAYL is the way forward for our xmas spending….